Status
Not open for further replies.

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,544
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I have not been able to find any information of the drug neurontin being linked with a possible cause of ALS.
The reason I bring this up is I was told this drug would help with my nerve pain due to my back injury, and I was on 2500mg dose for over 16 years. The doctor at the time explained that this drug would do something to the nerve neurons to cause them not to pass the pain signals to the brain. If it blocked the pain to the brain just makes sense it would also work the other way around. At least to a layman.
Makes me wonder if it did not damage the nerve cells and helped to bring on the
ALS.

I also had a head injury which caused me to be knocked out when I had my original injury, 18 years ago. I have heard some say if ALS onset was over age 55 might be related to head injury. I'm 59 now and DX with ALS around May. Symptoms for about 2 years now.

Just wondering if anyone has any research pointing in either of these directions.
Thanks and God Bless
AL
 
neurontin

Hi AL, I can tell you that neurontin is not good if you have ALS and are taking it. The neuro. Dr. Prescribed it for my son-in-law Jack said it would help with muscle cramps. My daughter questioned it because she had taken it a short time for neck and back pain for injuries from a car accident. The side effects dizziness and depressed feelings etc. are not her. Well, Jack was on it for about a week we noticed he was worse balance, he fell a few times. He was very angry and depressed. Had an I don't care attitude. Slurred speech. Stephanie realized the problem and he's not taking it . Well those symptoms are gone. It made him feel weak too. Haven't come across anything about neurontin being prescribed to ALS patients. Have you read the side effects? I guess it depends on the person too, like anything else but I thought I'd share this with you. My Best to you. Beebe
 
Beebe

I had stopped taking the neurontin about 2 years before my symptoms started. Because I was on it for such a long time I was curious if it somehow contributed to the ALS, since it targets nerves.
If anyone has read any links or studies about neurontin I would appreciate it. I know they now are claiming that it cause some people to have suicide tendencies?
I know I will never take it again. It was prescribed for back nerve pain due to a back injury from an accident years ago.
Thanks
God Bless,
Big AL
:-?
 
hi from Ala. lady

Hi Al,

Your post is interesting. Not so long ago science thought ours brains were protected between the scull on the outside and inside a blood brain barrier( think they called it that). Times have changed. About 10 years ago some of the symptoms I now have ( dropping stuff, like cup of coffee, all the time for one) were happening because 2 or 3 of meds I was on, when combined, interfered w/ nerve messages to muscles. Was great when taken off of them and my grasp on items returned to normal.

4-5 years ago the 1st neurologist I went to looked only for MS, didn't find it and prescribed the neurontrin as a goodbye, good luck. The pharmacist ran off a copy of its side effects. Then I was on 10 other meds, was feeling timid about adding more chemicals to the mix. In the past had several problems w/ meds combined that shouldn't have been (several were later taken off of market ). After reading the common side effects (dizziness, fatigue )was shocked. Went to this guy because my year of falls to the left turned into sudden falls in every direction. I never took it. Now after reading your post am really glad.

Perhaps there are multiple ways to insult our brain enough to start the cascade of neuron death. If we were centuries enough back, some odd soul might be tried and burned for practicing witchcraft against us

As far as looking for a reason ( if genes not a issue ) my subconscious works overtime and am beginning to wish it wouldn't. Wondered if the "Goldie Locks" personality( my husband says that I was only satisfied when things were just right, Princess & pea syndrome ( could always tell if a floor wasn't level, where a animal hurt{ it was from +heat in area--no mystery, but when others can't...} etc...to the silly stuff that is small kids conversation. What body part would you be unwilling to lose. At 10 years of age it was hard to imagine life w/o any one limb or sense. The other kids had made their choice & insisted--- choose. I decided Legs as loved running and walking. And guess where my symptoms started. Some of us are driven to seek answers, even if we get less solace from our search than we would like. This is both the blessing and the curse of our brain. By asking others, as you have, trails are started through this wilderness. That is what I love about this forum, solid information and food for thought.

Best to you and yours, Kathy
 
Thanks Kathy

My form is not hereditary, but old age onset haha. over 55. Be 60 soon, too soon.
I was wondering about the neurontin because I have gotten information that one of the side effects was causing suicide. And I did have a lot of depression back then. Never thought it was the meds just pain. Now there is a big lawsuit over the suicide issue and I was wondering if any way lawsuit could be sought for causing ALS if it did.
My main problem is when I die my wife will lose income because of the way my retirement is structured. We get money as long as I am alive. It stops when I die. Small social security survivor benefit, but that's all.
So was looking for possibility of suing for damages under neurontin if anyone was pursuing the research of it being causation factor.
My Doctor told me it targeted the nerve cells to interrupt and kill the pain, but no idea how it did it. Wish someone smart would look into it. A researcher or something because there are a lot of nerve injury patients still on this med.
Sorry for the rambling.
Good news folks, my son got out of hospital and seems to be doing good. It appears it was high blood pressure that threw off a TIA. His low BP number was around 135 when he got to er.
He will be on diet and BP meds now. Thanks for your prayers and support. Scared the heck out of me.Was afraid I would have to bury one of my sons while waiting to die myself.
God Bless ALL,
Big AL
:)
 
Interesting about neurontin. When I started having symptoms a year ago (speech difficulty and right hand weakness) the neurologist diagnosed small stroke. Said to stop taking hormones. Hot flashes came back with a vengence and research revealed neurontin was helpful in relieving hot flashes. Primary MD prescribed neurontin and I took, and did get some relief, for about 6 months. Then when 2nd and 3rd neurologist said not stroke, ALS instead, I stopped neurontin and went back on Prempro. I feel much better taking hormones. But it seems funny that no MD suggested neurontin might be a problem given my symptoms. Obviously didn't cause them but still...
 
Need more research

Very interesting subject; neurontin. Husband was taking 2500 mg. and within a year this slurred speech started to develop, now he has been diagnosed with ALS. Maybe this drug does damage the nerve cells, thus creating the mnd.
Feel there is something so simple causing this dreadful disease to appear. After so many years you would think there would be a cure or a drug that would treat it.
How many more private farewell speeches are going to take place before something is done about this complex disease?
Caroliney
 
When i was going through my MS evaluation before my ALS diagnosis the doc put me on neurontin... I must say i had a terrible reaction, my throat started hurting terribley even my sinuses. Then i felt like my head was being squeezed my body ached and i had to lay down from dizziness, and that was after one pill. Needless to say i NEVER took it again........ I never took a pill that gave me a sore throat, i would not reccomend neurontin to my worst enemy.
 
We took Tim Off Neurontin

We took Tim Off Neurontin Monday. We are going to see if he feels any different.

Lorie
 
Mt Pockets,
For some reason traumatic accidents seem to bring on ALS...
 
There is a site patientsville.com which has fda reports there are a few of people who developed als after neurontin, thought you may be interested in checking it out.
 
what about chantix

my husband took chantix for 3 months it stops the smoking signal from going to your brain it works there not sure exactly how. but all the symptons he had started after he started taking it right down to the slurred speech. It stops the nerve receptors from sending the signal to your brain so you don't want to smoke. could it mess up your nerves? has anyone else took chantix and then been diagnosed with ALS?
 
The ALS doctor put my husband on neurontin for itching and it worked. I think my husbands ALS had something to do with the testosterone shots I gave my husband.
 
This is interesting, my mom slipped and fell a few years back and did hit her head.... we always wondered if that had something to do with ALS. I have so many theories though. She also had some sort of ganglion or weird thing in her neck that was removed but was there for quite a while. My parents live in a somewhat rural community with farm land nearby (pesticides....animal byproducts). I always think there is a link with environmental factors but... a lot of people say its a gene mutation? The way I thought it worked is that some people are more susceptible to this disease than others, and, if you happen to get the right combination of something you may get it, you may not. For example I would be more susceptible since my mom has it (she has sporadic als).
 
Hi waterdreamer. My understanding of the way it works is that if your mom is sporadic then you are no more likely to get it that anyone else. My Neuro thinks the cause is related to a genetic predisposition coupled with an environmental toxin. So you could get it if you had the gene and were exposed to the same toxic mix. They haven't isolated the gene yet or the toxin yet. If they do then a cure won't be far behind.

AL.
 
Status
Not open for further replies.
Back
Top